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Earlier this year Google started working with Autism advocacy group Autism Speaks on a project called Mssng (Pronounced “missing,” to symbolize the missing knowledge surrounding the disorder.) Previously known as The Autism Speaks Ten Thousand Genomes Program (AUT10K,) it is an open source research platform for autism that aims to collect and study the DNA of 10,000 families that have been affected by autism. The goal is to create the world’s largest database of sequenced genomic information of Autism run on Google’s cloud-based genome database, Google Genomics. Though the pair have been working together on this since June of this year, they have recently announced a launch that will allow worldwide access to autism research for scientists.

Over 1,000 genomes have already been sequenced with 2,000 more pending. The results from the first 100 have been published in the American Journal of Human Genetics in July 2013.

On the official press release it was stated, “Once completed, this historic program could lead to uncovering various forms of autisms, like the various forms of cancers today. This in turn could lead to individualized treatments and therapies for those with autism”

This project has already sparked some strong reactions. One blog post by Amy Sequenzia on the Autism Womens Network was titled Is Autism Speaks a Hate Group? From the get go it makes some strong statements. It reads “I know they are hateful. I know they don’t like Autistics. I know they use most of their resources to convince people that the world would be a better place without us, and actually using the money to fund research that can make our extinction possible. Disguised as “research” about babies and siblings, the investments seek to find a genetic marker that will allow parents to terminate an unwanted pregnancy”

This is not the first time concerns were raised against Autism Speaks. A few months ago voices were raised against a partnership between Autism Speaks and Sesame Street. Lei Wiley-Mydske Said, “I am an autistic parent to an autistic child. I grew up watching [Sesame Street], and my son has too. I encourage you to end any partnership with Autism Speaks if you wish to truly celebrate diversity. I would be THRILLED to see autism portrayed on your show, but not when the message is one of despair and fear. Or one that would pretend that disability is shameful. In developing this project, please remember that autism is not something we do to our families, or our communities or anyone else. Autism is how my brain works and interprets the world around me. Our stories deserve to be told with US doing the telling. Not with someone else speaking for us. Again. Please don’t allow a group like Autism Speaks continue to dominate the conversations about autism. They do us harm. You do us harm when you partner with a hate group who wants to prevent people like my son and I from existing and spreads harmful and dehumanizing rhetoric about us.” There is even a ‘Boycott Autism Speaks’ Facebook page.

According to the American Psychological Association website “autism involves impairments in social interaction — such as being aware of other people’s feelings — and verbal and nonverbal communication. Some people with autism have limited interests, strange eating or sleeping behaviors or a tendency to do things to hurt themselves, such as banging their heads or biting their hands.” The symptoms of people with ASD fall on a continuum, with some individuals showing mild symptoms and others having much more severe symptoms. The spectrum contains subgroups of Asperger’s syndrome, pervasive developmental delay (PDD) and autistic disorder. Autism is said to currently affect one in 68 individuals in the U.S., and one in 42 boys.

The Autism Spectrum Disorder (ASD) has had increasing exposure within the mainstream media over the past few years which give a much broader perspective into the disorder than the hit film “Rainman”. Some examples include the 2009 movie “Adam,” where the lead character of the same name who has Asperger’s, navigates a relationship with a neighbor. There are also two lead characters in the hit TV show “Parenthood” who are on different levels of functionality of the disorder. The best-selling novel turned Broadway show, “The Curious Incident of a Dog in the Nighttime” that features a teenager who is described as having Asperger syndrome/ high-functioning autism. This play is what comedian Jerry Seinfeld attributes for identifying his autistic tendencies. In an interview he said. “I think, on a very drawn-out scale, I think I’m on the spectrum…Basic social engagement is really a struggle. I’m very literal, when people talk to me and they use expressions, sometimes I don’t know what they’re saying. But I don’t see it as dysfunctional, I just think of it as an alternate mindset.”

Autism Speaks, was founded by former vice chairman of General Electric, NBC and NBC Universal, Bob Wright with his wife Suzanne after one of their grandchildren was diagnosed with autism.

Dr. Stephen Scherer, a world-renowned geneticist is the director of MSSNG. He has previously launched the Database of Genomic Variants, the world’s first and most-used database of copy number variants (CNVs). This has enabled numerous medical geneticists and physicians to making hundreds of thousands of medical diagnoses. The hope for MSSNG is to lead to breakthroughs into the causes, subtypes and better diagnosis and treatment for the disorder Autism spectrum disorders (ASD).

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You have autistics themselves telling you how they feel about Autism Speaks. Yet you, like many others are choosing to ignore their voices and instead attempt to justify your relationship with them. I hope autism never effects your family but should it then you will see how damaging a fear mongering organization that claims to speak for them can be. Shame on you

Michelle Sarabia

Thank you for this wonderful article! As someone on Spectrum, also with a son on Spectrum, and a special ed teacher with students at varying levels of being on Spectrum, I have been horrified by the negativity from Autism Speaks. Yes, there are some major challenges that come with being autistic, but then people face major challenges all the time in other things as well. Let’s seek ways of curing mood disorders, psychoses, diseases, etc. Let’s find the strengths and celebrate the diversity among people whose learning styles and perceptions are different; who may struggle with the expectations of the “norm” in regards to social interactions, or with reading/writing/math, or with sitting still for 8 hours straight, but who, with nurturing and acceptance, can have insights and strengths that can cause them to soar on the wings of their discovered talents.

Debbie Denenburg

“”According to the American Psychological Association website “autism involves impairments in social interaction — such as being aware of other people’s feelings — and verbal and nonverbal communication. Some people with autism have limited interests, strange eating or sleeping behaviors or a tendency to do things to hurt themselves, such as banging their heads or biting their hands.”””

The above pathetic statement fails to give equal attention to the positive traits of autistic people. If you are going to report on a subject at least have the respect to present both sides of the issue. That’s just journalistic integrity. For the record, our positive traits far outweigh the negative ones. For example most autistic people have big loving hearts and great loyalty to those who show us kindness and respect. We have a wide variety of living gifts such as natural talents in art, music, science, mathematics and the list goes on.

What neurotypicals NEED to understand is that usually our negative behaviors are the result of frustrations. We don’t have viable outlets. Due to lack of communication ability we find it difficult to explain what we are feeling. We don’t know there are strategies for coping. Consequently, we are forming our own autistic groups where we as members can relate to each other. We are putting our heads together to figure out our own solutions. If you want REAL answers, ask US. Not Autism Speaks. There are no autistic people speaking in their organization. That makes them completely invalid.

One last point. The statistics of diagnoses are WRONG. Women are not getting the correct spectrum diagnoses. There is a great likelihood that the ratio of male to female is much more even. Women are much more difficult to diagnose because most of us have had to fake our behaviors in order to function in society. I, for one, am sick of this. I like who I am and I shouldn’t have to pretend to be someone else.

GMCMommy

As a parent of an autistic child, I find the disgrace for Autism Speaks confusing. I see and hear hate for them all the time, but also see the money raised for research and awareness by them. I can’t say I’ve ever seen where they say they are trying to eradicate the disorder, but find treatments. Many people seem to hate purely on a basis that they have no autistic people on their board. Would we hate the National Cancer Society if there isn’t a survivor on the board. In the same thinking should I not trust my son’s Doctor because he is not on the spectrum either? Does anyone know if their been legitimately qualified candidates for the board that have been refused based partially or solely on the fact they are autistic? I want to be educated, I want to support our not support based on am organizations merit. If there is proof they are negative, please share with specific examples and links.

I #BoycottAutismSpeaks I have a 21 year old daughter that I am not able to reach because she is now in a residential facility that is run by Reena that is funded by Autism Speaks grant. She needs her mother, because we need to test her for a genetic brain tumor I have. This residential facility will not let her get tested, we (my doctors and I) have been asking for my daughter to get an MRI for 8 years. My congenital (from birth) brain tumor may be cause of her autistic like behaviours as I had Aspergers like behaviours when I was younger. I have the top NeuroSurgeon in Canada, but yet this organization wants to have a Monopoly on all the research for Autism. I strongly believe they are going in the wrong direction with this project. They should let my daughter do the MRI and if she has a brain tumor get the treatment she needs instead of this bulls hit theory autism by a psychologist, when we can do actual tests. It’s time for Autism Speaks to get out of the way of parents. They only came into the picture 9 years ago. Stick to your own family and stay out of mine. Thank you, I was fundraising for far more credible and reputable Autism Charities before Autism Speaks came along.